Halloween and birthday photos

Our miracle child celebrating his fourth year! There is much to celebrate!!





"Bob 'd Builder" for Halloween

Back from Boston

NORMAL bilirubin - direct and indirect!
NORMAL albumin!
NORMAL hematocrit! (hemaglobin still a little low, but pretty close to normal!)

Wait, there's more....

Another night off TPN now, for a total of three nights off TPN per week!

We had a very good checkup in Boston... good labs too! Our biggest focus this time was that we still need to work on Peter's vitamin D status. Even though we have had him at twice the usual dose for the last 3 months or so, his stores still do not seem to be high enough. He will now go to 600 IU of vitamin D per day. During this trip we found out that Dr. Lo, one of the doctors that we see in CAIR clinic, has his PhD in vitamin D metabolism. That sure puts my mind at ease as we assess Peter's vitamin D, calcium, and overall bone status to assure he gets as far away from his past osteopenia as possible.

A new age, feeds, and the new tooth

Peter has turned four years old! Peter's birthday is All Saints' Day. It was an exciting birthday for all of us, as this is the first year that he really seemed to understand and care that it was his birthday. He even had gift requests - books, puzzles, and chapstick (he is a mouth breather and his lips get very dry if we don't keep up with ointment and chapstick). He decided upon pumpkin pie as his "cake," since he has to have pureed foods still. Better than the pumpkin pie was the whipped cream, though. He has asked for whipped cream again.

Photos of birthday and Halloween to follow soon.

On the medical front, Peter has made good strides (great strides for Peter) with his feeding increase sice we were in Boston nearly two months ago. He has gone from two ounces of baby food daily to five ounces of baby food daily. Vital Jr. has increased from 650 mL per day to 850 mL per day. He is taking a little over half of the Vital Jr. formula overnight via pump, and the rest is by mouth. All of the baby food is by mouth. He is even eating Gerber Puffs and Gerber Li'l Crunchies now. He ate a whole can of Gerber Li'l Crunchies this week in only about 5 days. They look like cheese puffs, and he ate about 85 of them over 5 days!

The new tooth is beginning to emerge. The top is........ BROWN! We are disappointed, needless to say. We are praying that the rest of his teeth will look better. The dentist told us two years ago that the only way to "fix" the color of teeth stained by bilirubin is to veneer them. Bleach will not fix the color. Hopefully they will be strong... more important than color in the long run.